Study Links Higher Death Rates in Adults with Congenital Heart Disease to Lower Income and Limited Insurance Access

New independent research published today in the Journal of the American Heart Association reveals a significant link between lower household incomes, limited health insurance access, and higher rates of death and disability among adults with congenital heart disease (CHD) in the United States. The study, which analyzed data from the Global Burden of Disease Study and U.S. Census Bureau from 1990 to 2021, suggests that geographic and economic barriers to specialized cardiac care may be driving these disparities.

Congenital heart disease, a condition present at birth, affects nearly 300,000 adults aged 20 and older in the U.S. While advances in surgical and catheter-based treatments have allowed more children with CHD to survive into adulthood, these individuals require lifelong, regular access to specialized cardiac care as recommended by the 2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease.

Senior author Dr. Anitha John, medical director of the Washington Adult Congenital Heart Program at Children's National in Washington, D.C., emphasized the importance of understanding socioeconomic influences on patient outcomes. "Long-term outcomes and quality of life depend heavily on access to specialized, lifelong care for people with congenital heart disease," she said. "Seeing how these factors affect patients long term allows us to better identify people at highest risk for complications. Then we can work toward improving access and reducing care gaps."

The study found that as median household income increased in a state, death rates for adults with CHD decreased. Interestingly, the relationship between income and death rates was stronger than the link between the percentage of uninsured residents and death rates. This suggests that having health insurance alone does not guarantee access to the specialized care required for CHD. Dr. John noted, "Insurance alone doesn't guarantee access to care. People may still face barriers if their insurance doesn't cover specialized heart care or if out-of-pocket costs are too high. In many cases, specialized care may not be available in their area at all."

The findings underscore the profound role of geography and resource access in survival and disability for adults with CHD. The researchers call for more trained specialists in adult congenital heart conditions, better distribution of these experts across the country, and improved referral systems to ensure patients receive appropriate care throughout their lives. Expanding telehealth and improving insurance networks are also suggested as potential solutions.

Michelle Gurvitz, M.D., an American Heart Association volunteer expert and chair of the writing committee for the 2025 guideline, who was not involved in the study, highlighted that many patients lose specialized care when transitioning from pediatric to adult care. "This study shows that some patients cannot see specialists because of issues such as insurance or their location," she said.

According to the American Heart Association’s 2026 Heart Disease and Stroke Statistics, congenital heart defects are among the most common birth defects globally and are the leading cause of death in the U.S. from a condition present since birth. This research emphasizes the urgent need to address disparities in access to specialized cardiac care to improve survival and quality of life for all adults with congenital heart disease.